The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 23 June 2017 23 June 2017
The long-awaited Pediatric ME/CFS Primer, written by an international group of pediatric ME/CFS expert clinicians, is now published and freely available.
Lead author Peter Rowe states, “Three years ago, Ken Friedman, Alan Gurwitt, and Rosemary Underhill invited an international group of experienced ME/CFS clinicians to write a comprehensive guide to the diagnosis and management of ME/CFS in adolescents and young adults. The IACFSME had published a guide for adults, but there was no similar publication to help clinicians manage the unique aspects of ME/CFS in children and adolescents.”
Not only does the Primer contain a wealth of practical clinical advice, it also includes facts sheets and sections on working with schools and a sample physician’s letter to the school, authored by Faith Newton, Ed. D. It is a valuable guide for health care providers, parents and families, and school personnel.
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer"
Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe
Faith Newton Ed.D., Department of Education, Delaware State University, Dover, DE, USA contributed Section “The School System” and Appendix D.
Evan Spivak, DDS, Department of Pediatric Dentistry, Rutgers School of Dental Medicine, Newark, NJ, USA contributed Section “Oral and Dental issues.”
Appendix F is based upon “Considerations Prior to Surgery for Adult ME/CFS Patients” by Dr. Charles W Lapp MD, Director, Hunter-Hopkins Center, Charlotte, NC, USA, with permission.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.
- Last Updated: 29 May 2017 29 May 2017
In recognition of May 12th, last week and this week (May 8-19) our Association is participating in a national ME/CFS advocacy effort co-led by Solve ME/CFS Initiative and #MEAction. We have completed Week 1, which was “local” week; across the country, ME/CFS advocates visited the local district offices of their U.S. Congressmen/women, and asked for Proclamations from local governments (state, city/town) declaring May 12th ME/CFS Awareness Day.
L to R: Rivka Solomon, Rick Glassman (Advocacy Director, Disability Law Center, Boston), Dr. Michael van Elzakker (ME/CFS researcher MGH and Harvard Medical School), Sen. Cynthia Creem, Robert Price, Senate President Stan Rosenberg, Lt. Governor Karyn Polito, Charmian Proskauer (President of Massachusetts CFIDS/ME & FM Association), Dmitri Gridnev (representing Rep. Ruth Balser), Alina Kaminsky, Leah Williams, Elizabeth Potter, Robert Robitaille, Kathy Robitaille, Nancy Smith (those without titles are all members/volunteers representing Massaschusetts CFIDS/ME & FM Association).
This week, more than 50 advocates, including Leah Williams from our Association, have descended on Washington, DC, to visit the national offices of Representatives and Senators, share their own ME/CFS stories and invite their elected officials and staffers to a Congressional briefing on ME/CFS, sponsored by our own Massachusetts Senator Ed Markey, tomorrow, Thursday, May 18.
Here in Massachusetts, we organized our members and friends across the Commonwealth, and last week they made visits in 7 of our 9 Congressional districts. Thank you all! We also encouraged and supported advocates in six other states who contacted us for information and assistance.
In Congressman Joe Kennedy III's district office. L to R: Bob Robitaille, "Robie" Robitaille, James Cody - District Coordinator for Congressman Kennedy, Dr. Alan Gurwitt, Amy Cuzzupoli, Charmian Proskauer - President of Massachusetts CFIDS/ME & FM Association, Phil Chernin.
Members Margaret Lauritson-Lada and Susan Buckley at Rep. Michael Capuano's district office
N.H. advocate Grace Woodham with Patrick Carroll and Sharon Nichols at Rep. Carol Shea Porter's office in Dover, N.H.
Our members also got Proclamations for ME/CFS Awareness Day in 4 cities: Northampton, Pittsfield, North Adams and Cambridge, and one from the Commonwealth of Massachusetts. This helps increase awareness in our own cities and towns, especially if accompanied by articles or letters in local papers. Taking one extra step with the Proclamations, by inviting dignitaries for a “photo op” of the presentation, led to a series of very productive discussions with elected officials and supporters at the city and state level.
Advocates with Massachusetts State Representative Ted Speliotis (3rd from left)
Advocates with Cambridge, MA, Mayor Denise Simmons at Cambridge City Hall
Many thanks to our national advocacy leaders, Emily Taylor from Solve ME/CFS and Gail Cooper from #MEAction! Thanks to Bob and Kathy Robitaille, our Association volunteers who coordinated our state-wide effort, to super advocates Rivka Solomon, Mark Camenzind and Harvey Keith Carden who led the Proclamation project, and to all of you who participated in so many ways! We are Creating Awareness!! And taking Action!!
- Last Updated: 02 April 2017 02 April 2017
Board member Leah Williams advocated for more funding for ME/CFS research during several meetings with Massachusetts members of congress in Washington DC in mid-March 2017. These meetings were some of the 30 meetings held by a group of advocates, coordinated by the Solve ME/CFS Initiative and the Congressional group of the U.S. Action Working Group.
Left to right: Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair
Left to right: Carol Head, President of SMCI; Emily Taylor, SMCI Director of Advocacy and Public Relations; Senator Elizabeth Warren (MA) and Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association.
For a more complete report on the week's activities, see "Solve ME/CFS Initiative storms DC to tackle the Federal Budget."
- Last Updated: 02 June 2017 02 June 2017
Llewellyn King talks with members of our Association in his ME/CFS Alert video series, recorded on March 24, 2017.
NEW! In this conversation, Libby tells of her long journey from being bedridden with ME to being able to function, albeit at a reduced level from when she got ill. She says that a series of holistic therapies, including a special diet, have been working for her.
Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017
The work of the Massachusetts CFIDS/ME & FM Association | Episode 86, published on March 29, 2017
ME/CFS Diagnosis, children with ME, and the medical community with Alan Gurwitt, M.D. (Episode 87), published on April 12, 2017
Children with ME, Being an Advocate and Advice for Parents | ME/CFS Alert Episode 88, published on April 23, 2017
More to come...
- Last Updated: 28 February 2017 28 February 2017
"I will be your advocate for more research" Massachusetts senator Ed Markey promised an ME patient at a Town Hall meeting on Feb. 23rd.
Read the story, view the video clip, and then call Senator Markey's office (202-224-2742) to thank him for promising in Northampton to advocate for M.E. on Capitol Hill. If you are an ME patient let them know. If you are a Massachusetts resident be sure to say that. Our Association will be following up with Senator Markey to let him know how he can help!
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Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.